Wednesday, October 26, 2011

Pour Your Heart Out: When I Can't Be Upbeat

Welcome to Pour Your Heart Out- if you need more info on how to participate, check out THIS post. But it's personal- it's what YOU think is pouring your heart out. Please grab the PYHO button or link back in your post if you are participating.

Again, just a brief reminder that everyone linking is pouring their hearts out and we should all be respectful in our comments. ;)

I thought for sure this would be an easy week for me to "Pour Your Heart Out."

It's Lead Poisoning Awareness Week so I thought I'd talk about how Bear's lead levels continue to come down and how much progress he's making at school. I thought I'd share how sometimes, as a mom, we can do things to protect our kids but we can still miss things and how we shouldn't blame ourselves.

And yet, here I am, not ready to write an upbeat post about progress.

Because while Bear's lead levels do continue to go down, we don't know how much permanent neurological damage has been done.

And while he's doing better at school than he was at the beginning of the school year, I still have to pick him up two hours early every day because the full day is just too much for him. And he still manages to find trouble. And that he seems "off" in comparison to kids his age.

I just wish things could be easy for him.

He has a psychologist appointments this month to further evaluate and see if there is anything else we can do to help him. We're hoping for help.

But, I can't find it in me to be upbeat about it right now.

And while I could write the second part of the post, about how we can miss things as moms, even when we think we are being careful... I can't talk about not blaming myself.

I used to check all the recalls diligently to make sure my boys didn't have any toys that contained lead.

But, it was our home, which we were told was safe, that poisoned my son- my Bear who was at that stage where kids put everything in their mouths: oldest was past it and youngest wasn't there yet, which is how only one of our children was affected.

And even though I've been told time and again that I couldn't have known, that I did what I could, that we can't see every danger....

I still blame myself.

And I sometimes live in the Land of What-If where I wonder just how different Bear's life would have been if we'd caught it earlier.

I cannot pretend to empathize with what you're going through as I've never been through anything similar. I hope it helps to know that we are here to listen, to help whenever possible, and provide a support base. You are obviously a loving and caring mom, and that's leaps and bounds more than some people can claim.

My heart hurts for you as I read this. My oldest has SPD and Aspergers, and I wish life were different for her too. While I know much, if not all, of her issues are genetic, I wonder what if we had started therapy sooner, what if we could have continued it after she turned 8 and stopped bc we couldnt afford it..

we went dress and shoe shopping yesterday, and with a sensory defensive preteen girl? it's just a harrowing experience. I need to PYHO that next week probably, trying to explain how I feel when I take her shopping.

Thanks for providing a safe place and reason to dig deep and pour our hearts out. I did just that on mine last night to link up with you, and just feel really grateful for the gift PYHO is.

What if it hadn't happened, and there would not have been your ability to reach other momma's and let them know the dangers? What if Bear never did it, how many kids would be dealing with it now because you would have never had a reason to speak up and out about it, reaching not just your immediate area but the entire internet? What if our trials are really blessings and God is using it to bring him to a complete healing, despite what the doctors think??What if he hadn't had you as a mom who knew something was off and pushed and pushed until you had an answer? What if you had never picked yourself up after the diagnosis, dusted yourself off and just wallowed in the guilt and the pain and Bear had not received the awesome care he got and come as far as he had?Sweetie you can do a lot of what ifs.. but let me show you these. The ones you really need to think about. You cannot change the past, it is what it is, but you ARE changing the future for him and so many others.

Watch out for those "what ifs." No good can come of them. It's hard to come to terms with the fact that we cannot change the past. We have to strive to focus that attention, thought, and emotion on the future instead. One day at a time...

Oh, Shell. I can't say anything here that you haven't already heard or would probably even tell others if the situation were reversed. I can't imagine what you're going through or the ups and downs that you have to sort out. Hugs to you and your little one.

hugs mama. i think everyone plays the "what if" game and however much you don't want to blame yourself it is always in the back of your mind. You did everything you could and you are getting the help he needs now. he's lucky to have you as his mama!

Shell, I am so sorry. I know it is agonizing to watch your little one struggle. Sometimes it feels so frustrating that we can't turn back the clock and protect all the people we love, especially our kids, our babies, who we'd do ANYTHING for. I wish I could have protected people in my life, and though neither of us are to blame for outcomes, it doesn't keep us from wishing away struggles and pain from those we love. Hang in there.Thinking of you and sending hugs to you and Bear.

the what if game...oh yeah, one of my favorites....and I'm not going to ply you with words about you did the best you could, he'll be fine, don't worry, blah blah blah...because it's only you that can heal yourself...but I will tell you this...from reading your page I know you're a good mom, and that you really do the best you can for all your boys...HUGS mama...I know what it feels like

A person can play the 'what if' game on a lot of things, but the fact is, there's no point in it. We just have to accept the reality of what is, and make the best of it. I know it's hard, and I would totally feel like you do. I would probably be very angry. I'll pray for you and Bear. I'm glad he's doing better, and I hope that he will continue to get better.

I'm really sorry you're feeling down. For me, playing the "What If" game gets me nowhere. I was convinced for years that I messed up my firstborn in utero and was always beating myself up about it. I don't let myself do it anymore. I'm just focusing on helping him today and tomorrow. You're a wonderful mom and I'm sure you'll continue to do all you can to find - and get - all the help that Bear needs.

How about 'what if' you never discovered the problem? 'What if' Bear wasn't here? And 'what if' Bear's Mommy didn't have such an amazing, inspirational heart? Last but not least, 'what if' Bear didn't have you as his advocate?

Oh Shell, I can totally relate. I went through a life-changing illness this past spring, and I have some permanent damage from it. Six months later I keep TRYING to look at how far I've come, but being upbeat about the progress is hard. Don't be too upset about that. We all have to work through our grieving process in our own way and in our own time. I understand now that this IS a grieving process. Looking back at "what if" is part of it. You'll write that upbeat post when you are ready, but you are still dealing with the frustrations that bring the beginning right back to the surface. I'm sending you positive thoughts for strength and peace.

Oh Shell, I'm sorry you have to go through this with bear. The land of what if can be torture. I often get upset with myself that I didn't catch things earlier, or fight harder for my oldest in the beginning.

This is when we try to tell ourselves that God's plans are good. But there are those times when it's OK to be angry, and those reassurances just sounds cliche.

So, I'm sending you hugs and prayer on this day that it's OK to be angry, and ask what if.

But, tomorrow is a new day, and I pray you find joy in the morning! Bear is so lucky to have a mommy who is fighting for him! I hope you get some answers at the upcoming appt.

It is SO SO SO not your fault! It's just one of those things that happened and it totally sucks and could have happened to any mom out there. You couldn't have known!! As hard as it is, your story is probably helping more parents out there be more aware of the dangers of lead and what it can do. You should be proud of the fact that you are sharing your experience!

We don't have the struggles you guys do and I still ask my self what if. For everything. I think it's the curse of mommyhood. I hope he does get better. But even if he still seems "off" or has trouble. He's obviously a super amazing little boy. Hopefully you can get back to being upbeat while thinking of that.

I'm sorry you are feeling this way. The what if train seems to be making stops in multiple cities today. I just linked up with you on that one.

There's a quote in there that I think we both need to work on: forgiveness is giving up the hope that things could have been different. I'm not there yet but today, I will repeat that one a few more times...

oh dear. I don't know what to say but I want to say something supportive. you will have to let go of blaming yourself, you know that. there are things we can't control--even when we think we can. good thoughts to you.

I wish there was something I could say to truly and completely ease the pain. Unfortunately, I know all too well there really isn't a whole lot. A mother's guilt is a heavy weight many of us carry, unfortunately. I know I have my fair share with each of my children. In my opinion, the grief can be similar to dealing the loss of a loved one, and should be treated as such. My heart goes out to you and I will keep you in my thoughts...

That's the beauty of this meme - you don't always have to be upbeat! As moms, we blame ourselves for everything that we cannot blame others for. I've always thought that if I did something differently that my kids wouldn't have both been preemies. They've ended up okay, but they're smaller and more prone to illnesses than their friends. The important thing is what you're doing now.

I really can't find the exact words to comfort you or ease your mind. But know that my prayers are with you always.

It's hard not to play the what-if game, but I guess that only thing that's really important is thinking of the bright future that your son has because of his progress. He wouldn't be able to get there if it wasn't for you and everyone else who support you all the way.

I love your honesty in this post. It would be so easy to just write your "upbeat" post about how he's doing better and not share how you're really feeling, so bravo to you for sharing! It is so hard not to play the "what-if" game, but I guess you just have to believe everything happens for a reason. That's what I keep telling myself. Thoughts and prayers to you :)

It is ready to live in the land of what if, but you can't. The land of what if isn't there to help you our your son. It is there to torment you. So just try to visit occasionally. ;) I am here for you my friend if you ever want to talk our vent. We can Skype.

I think mommy guilt is something always lurking in the shadows because We aren't perfect humans yet we are responsible for raising others. Such a hard thing to deal with. When it gets the best of me I just have to let it go or go insane. I can let it well up until it has me so upset and making everyone else around me miserable until I realize I can't change what has happened even if it was done by my hands or not and make the best of it going forward as you are. Fighting for your son and doing all you can for him makes you a hero. You are a hero. And you are influencing others to be the same even when you are down.

The what-if game is brutal - I've played it with myself after near-misses, things that could have done serious harm to my child, and it eats me up. I can only imagine how it might be to play it from the other side.

I would tell you not to blame yourself, that it's not your fault, you didn't know, these things just happen sometimes. But I know - I *know* - it wouldn't do any good.

So, instead I'll just offer you my love and support and a big virtual hug. For whatever it's worth.

One of the things I've always admired about you is your raw honesty and your ability to be vulnerable.

No matter how many times you can be told by professionals, family and friends that something's not your fault, it still continues to haunt you. As a mother, we always feel at fault when our child is hurt somehow. We've set the bar high for ourselves and feel we should have a 6th sense about this kind of stuff. And when we don't, we beat ourselves up with all the what if's.

And even though you can't change what's happened, you're an amazing mother to him...helping him get the resources he needs, being in his corner, constantly fighting for him. You're his biggest advocate...his biggest fan. And that's what all children need!!

I'm so good at the what if game. Self destruction is so easy sometimes. We had something happen this weekend that turned out to be nothing, but totally could have been something horrible. I played the what if game the rest of the day, but the truth of the matter is that the what if doesn't matter. We have to live with the what IS. He has it, you know he has it and you are doing everything in your power to ensure he has the best life possible. That's all we can do as moms. Nothing more.

BIG hugs to you! It has to be difficult for you and yours. I know how easy it is to fall into the 'what-if' game, especially lately with our eldest. I keep you in my thoughts and hope that your Bear keeps improving. We always do the best we can, my friend...

I am playing the what if game with myself too - in an entirely different matter - but it's still the same game. It's so hard wanting to change things, but yet knowing that you can't - and have to try to live without thinking about what could have been if one thing had changed.

It's OK with me if you can't be optimistic all the time. It's scary stuff and I'm so sad that your family is dealing with this. I'll keep good thoughts going out there in the world for you and your son.

It is so hard not to blame ourselves. I still go back and for on what caused my oldest's autism. When I was pregnant after her I did everything under the sun to avoid, toxins, the wrong foods, etc and we ended up having trouble of a whole different kind. Somehow we need to be able to give ourselves a break.

Aww, Shell. I'm sorry. I won't tell you not to blame yourself or not to live in the land of what-if, because I know you'll go there again. It's what mom's do. But you have to believe that you are a GREAT mom. And even though you couldn't prevent what happened, you are doing EVERYTHING you can now to make it all better.

oh Shell! my heart's aching for you. those "what-if" questions are so haunting. all I can do is offer a hug and reiterate that you can't blame yourself. but I know that's just not enough. praying that your son will get better and your heart will find peace.

The "what if" questions will drive you crazy...and I'm sure nothing I say will make you feel better about the situation. You can't blame yourself...and you're doing a great job doing what you can for him. Keep your head up momma!

Oh, big hugs, thank-you for sharing. I hope at some point you will be able to not blame yourself. We don't, and Bear never will. We are not omniscient, we are not omnipotent. We are all just doing our best, and judging by how Bear is doing now, your best is pretty damn good.

Oh, you sound like such a wonderful mother bear protecting her cubs. I'm so sorry that this whole thing happened to your family because of negligence. I can't even fathom the anger and frustration you must feel at times. Bear seems like such a beautiful kid- you must be proud of how far he's come! (Hug)

I think the best we can do for ourselves sometimes is to be loving and accepting of where we are. You can't be upbeat all the time. ((hugs)) to you and your family! I know you'll find the upbeat side when it's time.

I wish Mom Guilt did not exist.I feel it too, my oldest son has Chiari Malformation and although the cause is not known, it occurs during development in the womb. So I will always wonder what I did wrong to cause his brain not to develop properly.

I'm sorry to hear what you and your son are coping with. I know as a mom, we always look for the "what if" in every situation. But just be assured that there is NOTHING you could have done differently. At least you have shared your experience and can hopefully prevent at least one other person from going through the same thing!

You are a great Mom Shell!! And it is true, we can't protct them form everything, we can try but we are going to miss things, we are human. I glad to hear your little guy is imporving. You will find out more is next appointment and then you can work towards improvement then. For now, keep doing what you are doing!! Loving him!

Mama,This is not your fault but I know as Mommy's it is impossible for us not to question what ifs if ANYTHING happens to our children. mY heart is with you and your Bear and I hope someday you can know that it is not you who is to blame but the house. *hugs* I know its not enough

I'd tell you not to feel guilty because I believe, to the bottom of my heart, that you shouldn't. Still, I know from experience that guilt is part of the mommy condition and is at least twice as bad when your child has special needs. I would tell you to focus on how awesome your kiddo is and what a wonderful mom you are, but I know you usually do. What I think needs to be said, because it's what I want to hear when I am having one of these days, is this:

You're absolutely right, some days, no matter how much progress they make, it totally sucks to see your child suffer. Some days, the world deserves to have you shake your fist at it and a big fat lip because your baby has to work harder than all the rest of the kids. Some days, you get to feel crappy and wonder what if, and cry out because life with a child with special needs is hard and because you have to make all the decisions and there's no damn rule book and you're going to make mistakes. As long as "some days" aren't every day, own this one, baby girl, you can be shiny and new tomorrow. Some days, we just need to let the tears wash all of the things we usually close our eyes to right off of our eye lashes.

If I could be with you right now, I'd wrap my arms around you and give you a hug. Since I can't, know that my heart and my prayers surround you. Know that by reading your beautiful words, I feel like I can sit right here and be mad with you, be hurt with you, be guilty with you. And tomorrow, we'll read each other's posts about something crazy or silly and I will laugh with you. Be blessed, dear one, and know that "all that we can be" will be enough.

I think you are an AWESOME mom and obviously love your children so much. I think we all blame ourselves for something, however incorrect we are, it doesn't make us stop...comes with the territory of being a mom. Wishing you and yours all the best...Your Bear is so adorable!

I'm not going to offer platitudes, because I know that in your shoes, I would feel the EXACT.SAME.WAY. It's because you love him so much... but I will say that from what you've said here, once you did catch it, you became his warrior and that makes you one heck of a mama!

I'm so sorry. I'd love to say "don't beat yourself up" and I totally believe that. But as one mom to another, I totally understand. They are our hearts and souls walking around and anything that hurts them hurts us exponentially.

Please try not to beat yourself up. I feel like he's the luckiest kid alive to have YOU.

As parents, that is probably one of the things we are MOST guilty of.. blaming ourselves. I know I do it too. But we aren't God and we aren't perfect. We have to trust that God IS perfect and he is holding it all in his hands :)

Oh that's hard. Aren't we moms just born with the genetic predisposition to make it our fault and wonder what we could have done differently? Even though the true cause of autism is unknown, I always wonder if I missed something or did something unknowingly. Mom is the hardest job in the world with the biggest payoff in the world. =)

You did nothing wrong. You are all like victims really - victims of the circumstance. As soon as you knew what was going on, you did something about it - what more could you have done. It sounds to me more like grief. Just trying to grapple with the loss of what this has caused. Having to come to terms with what was taken from you because of it. I'm sorry you have this struggle. We all only want the best for our children. Sounds like you are doing the best you can for him! Children are so much more resilient than we think. Take care.

Don't blame yourself. I know it's hard, but you can't. It will drive you crazy. I wish I was there to offer a hug, a cocktail hour and a good long venting session. Keep your head up. You're a great mom and that's what matters!

First and foremost ((((hugs))) Your Bear is very young and you are doing everything in your power to help him. You are doing it right. And you're right, sometimes it is hard to be upbeat. During those times we need to reach out. ((hugs)) again.

When my 3rd son started complaining about stomach aches when he was in 1st grade - and in 3rd grade we took him to a major pediatric hospital who blew us off and in 6th grade, when he ran like someone's grandma and could barely make Cs without major help - I dropped to my knees in prayer. I'd been praying, asking for God's help - doing EVERYTHING, like you did, that I knew to do. 3 days later, someone gave me the name of a dr - and he scoped him and he had severe esophagitus that was like heart-attack pain. They put him on the purple pill and the pain receded. Now it is controlled through diet.

He teases me about how we blew him off - but we did everything we knew to do, including multiple visits to the dr - one who even told us it was in his head. I've had to look him straight in the eye, and say, "You know we did everything we knew to do" - and he teases me because I think he knows that.

You need to stop beating yourself up - and look at what you have achieved as a mother - how you did save him, how you work so hard to overcome. Put your energy into the rebuilding.

It was the end of 6th grade we got our diagnosis. He's a jr. now - and he has rebuilt his speed, his foundational muscles, and has had to retrain his ability to focus on school work - which he excels in when he is focused. Rebuilding takes time - just love and encourage in the now the best you can. Savor - and believe in total recovery. Never settle for less! God doesn't!

These mommy challenges - well, that's why God gave us these children who would face these challenges - because He knew we would NOT give up!

The Land of What-if is a tricky place to visit...try to stay away from there and focus on the Land of What's-to-come.

I don't have any real experience with lead, but I know that I too would blame myself. It's what we do as mothers. You're a wonderful mother and he's a great kid...just needs a bit more right now. Love, Me.